Good Afternoon, My name is Tanya Renee Mack. I am here representing (COVVHA) Children of Vietnam Veterans Health Alliance INC. I am 39 years old and am a 2nd generation Agent Orange Survivor. My father, SSGT. James Sciaccotti was a Combat Controller in the United States Air Force and was part of the Special Operations Squadron, 101st Airborne Unit in the A shau Valley from 1966 –1968.
The age range of children of Vietnam Veterans is roughly between the ages of 20-45. Many of us have Fathers with service connected Agent Orange Claims recognized by the Veterans Administration. Most of us have Dads who are dead or dying of Agent Orange presumptive illnesses that have been recognized by the VA. Our lives and the lives of our kids are the result of a giant science experiment between the United States Government and the chemical companies gone awry. New information known about human exposure to dioxin and trans-generational exposures, reinforces our belief of a strong plausibility of an epigenetic link to our illnesses and our Father’s or Mother’s service connection to the Vietnam War. We have been treated as collateral damage. The science is now quickly catching up with what we have known all along, we’ve been damaged by a war we did not fight.
COVVHA completes an informal survey when a new member joins our private support community. Through our 500 members (only COVVs) we have consistently been faced with like illnesses, and deformities. We want to bring this information to you, the IOM, urging this committee to finally investigate fully what has been done to us and our children. From our informal research we believe the children and grandchildren of Vietnam Veterans have a much higher instance of several types of disease. (In our submitted documents you will see the categories of illnesses and the number of times the illness has been reported). Represented in our membership also, are several suffering from the illnesses on the Veterans Presumptive lists, please keep in mind this is a group of people between ages 20-45. Diabetes Type II, Hodgkin’s Lymphoma, Ischemic Heart Disease, Non-Hodgkin’s Lymphoma, Peripheral Neuropathy, Acute and Sub-acute Respiratory Cancers, Soft Tissue Sarcoma, Parkinson’s Disease.
Our membership of 500 COVVs have reported as many as 93 different congenital anomalies. Fourteen of them listed on the testimony we have submitted are some of same birth defects that are currently covered for the children of Women Vietnam Veterans. Considering there were 6-8 thousand women Vietnam Veterans and Approximately 2.8 million men who served, COVVHA believes this Study was used to keep the children of male Vietnam Veterans from making claims even though early studies showed dioxin caused birth defects in the children of Male Vietnam Veterans. Our fathers were told they were overreacting; there was no scientific link to their children being born with birth defects, rare illnesses and cancers. Air Force study of Ranch Hand personnel responsible for herbicide spraying reported statistically significant increase in reported birth defects in the Ranch Hand group (Albanese, 1988). Defects included: Skin defects, Neural tube defects, Heart defects, Oral clefts, and Kidney defects. Erickson, et al (1984) reported that risks for fathering an infant with spina bifida, cleft lip, and certain neoplasms” were higher for Vietnam veterans than controls. Increased evidence of birth defects were also reported in a population of Vietnam veterans living in Tasmania (Field and Kerr, 1988)., These were ignored, as were many other studies on the effects of dioxin on offspring from other countries, like in Vietnam where reports of birth defects, miscarriage and deformities were rampant.
In September of 2012, Washington State University released an epigenetic study looking at exposures of female mice to dioxin and the trans-generational effects dioxin had on the children and grandchildren of the mice. The Study showed there was a negative trans-generational effect. We need more of this type of research, Skinner, et al (2012). That study was funded partially by the Department of Defense. Why can’t they replicate the same study, but just expose male mice?
COVVHA would like to offer the following recommendations (See our submitted testimony for more):
A. The eighteen plus birth defects for children of female Vietnam Veterans should be approved for children of male Vietnam Veterans: This act alone would help some of the most disabled, and those in most desperate need of services, in the COVV community.
B. Free DNA and Epigenetic testing for the biological Children of Vietnam Veterans : (Our Data shows that biological children of Vietnam Veterans who have been required by their Doctors to have DNA Testing have proven to show genetic mutations. See submitted documents).
C. An official agent Orange Registry for Children of Vietnam Veterans (COVVHA proposes that an official Agent Orange registry be made available to the biological children of Vietnam Veterans.) COVVHA has submitted the types and numbers of each of the roughly 694 illness we have had reported over the past year.
We are willing to cooperate with the IOM in any way possible.
The following is a glimpse of how my Father’s exposure to Agent Orange has affected my life. I am 39 years old and am a 2nd generation Agent Orange Survivor. I was born with severe hip dysplasia and started having hip reconstruction surgery at just 4 months old. I learned to walk in a full body cast after my second reconstruction at 13 months old. After 15 hip reconstruction surgeries, at age 17, I had my first total hip replacement surgery. 22 years later, I’ve had 4 total hip replacements. Currently, I’m scheduled to have it replaced for the 5th time. At 32 years old I started to develop multiple basal cell and squamous cell carcinomas. They were very aggressive and according to the pathology reports, were a different mutation than normal. I was sent to UCLA to have genetic testing. There, I was diagnosed with Basal Cell Nevus Syndrome (also known as Gorlin Syndrome) with a Mutation in my PTCH1 gene. A mutation in this gene is only caused one of two ways. It is either inherited from a parent or a new mutation occurs due to chemical or biological environmental exposures. Only 20% of all cases reported are new mutations. Both of my parents were tested, and neither one had the mutation which means that I am in the 20% of new mutations.
By the time I was 34 I had a total hysterectomy due to Squamous Cell Carcinoma in my Uterus and on my Ovaries. At 35 years old, I was diagnosed with Lupus and Raynaud’s Disease, again no family history. I was also informed the severe back pain that I was having was a curve in my spine. In 2010, I was diagnosed with Melanoma. I was fortunate that is was caught early and had not spread to my Lymph Nodes. It did however, spread far enough to have tissue and muscle removed, causing a golf ball size disfigurement in my shin. August, 2011, I was diagnosed with another rare form of Cancer called Bowen’s Disease. Now, my Oncologist was extremely worried because they almost never see this in someone as young as me. Bowen’s Disease is caused by extreme exposure to Arsenic and is considered Arsenic Poisoning. Since I have never worked or been exposed to herbicides or pesticides, I was told by my Oncologist that it was due to my Father’s exposure to Agent Orange. Over 50% of the Compound used in Agent Orange was Arsenic. In March 2012, my Oncologist found a large tumor on the neck of my gallbladder which required another surgery to have my entire gallbladder removed.
As of today, I have had 198 skin biopsies of which 181 were positive for Cancer. I am currently on a new Cancer drug in which I was involved in the Clinical Trial. This drug, however, will only slow down the progression of Basal Cells and still leaves me vulnerable for Squamous Cell and Melanoma. I’m in constant pain and my quality of life has decreased drastically over the last several years. My medical costs with insurance runs an average of $800-$1000 dollars a month. These costs consist of office visit copays ($45 per visit) and tier 6 drugs, these do not count toward my annual out of pocket maximum. Because of this, I struggle every month to make ends meet as my medical insurance and copayments/coinsurance have to be first priority. In March 2007, in an attempt to get help with my mounting medical costs, I applied to the Department of Veterans Affairs for benefits (38 U.S.C. 1815). I sent the V.A all of the required documents, and medical records. I felt confident I would get some help because after all, Hip Dysplasia is a covered birth defect. Four months later I received a letter from The Department of Veterans Affairs denying my claim (See Statement below).
“We denied entitlement to a monthly monetary allowance for your claimed birth defect(s) because the evidence
does not show that your biological Mother served in Vietnam to qualify for payment under 38 U.S.C. 1815. The
claimed disability is hip dysplasia which is considered a qualifying condition. However, regulation 38 C.F.R. 3.815
refers to benefits allowable for an individual with disability from covered birth defects whose biological mother is or was a Vietnam Veteran”
I remember thinking that my Father’s Service to his Country would end up killing me. In my opinion, this was blatant discrimination against men and their offspring. I became depressed and wanted to give up. I was undergoing systemic chemotherapy at the time of my denial letter, and did not know how I would be able to continue since I could not afford the coinsurance for each treatment. Without going into detail, I will say my family has had to give up a lot so I could stay alive. August 21, 2012, My father passed away from Lung and Colon Cancer. He was 64 years old. His Cancer had been attributed to his exposure to Agent Orange. At the time of his death, he was receiving benefits from the V.A. and was considered 100% disabled due to service connected Agent Orange Exposure…..But of course, according o the V.A., there was no possible way that his exposure could have any effect on me, Sad!
Please See Below COVVHA’s Full IOM Testimony Packet
© (COVVHA) Children Of Vietnam Veterans Health Alliance INC
Children Of Vietnam Veterans Health Alliance